THE
PATIENT PROFILE – A NURSING TOOL FOR CHILDREN WITH DISABILITIES
Touzel,
B A
Royal
Children’s Hospital, Melbourne, Australia
Objective: Children with severe disabilities commonly have no effective
form of communication and are totally dependent on their families and
others for all aspects of their self-care. As a result of complaints from
parents, carers and community groups at Melbourne’s Royal Children’s
Hospital lack of communication was indentified as a major problem hindering
the delivery of quality health care to these children. In response, the
"Patient Profile" was developed to create an effective
communication tool for use by nursing staff and other health care team
members.
Development: Parents and daily care providers have learnt the best way to
meet the child’s everyday care needs. Normally this experience is lost when
the child is admitted to hospital and cared for by many different
people. In developing the
Profile, the parents and day-to-day carers were regarded as the “teachers”
in conveying the needs and information in a way that could be sustained
despite changing staff and circumstances over time as the child's care
progresses or the child is readmitted to hospital. It has developed from
its initial purpose to address the needs of children with severe cerebral
palsy to being used in the care of a broad range of disabilities and by the
wider health care team. The Profile has also evolved to encompass advances
in medical treatment and to support the increasing integration of children
with disabilities into the community.
Results: The Profile has become an accepted tool at the Hospital in the
nursing care of children with severe disabilities. It has been integrated
into the relevant clinical pathways and communication-related complaints
have decreased significantly.
A community group has also used the Profile as the basis for a
commercially available tool for children with disabilities.